Photographer Lieve Blancquaert ( in her own intense and very personal way portrays six persons with dystonia. ‘1/125’ refers to the shutter speed she used to slide in between the strange and often uncontrolled movements her models made to catch a glimpse of the person behind the dystonia. A search that proved difficult at times… perfectly illustrating the impact the affliction has on their everyday lives. 


  • Annick

    • My life was cut into two parts: ‘before’ and ‘after’ dystonia. Before my dystonia I helped dozens of people in the pharmacy every day …

    • Now I’ve been housebound for more than a year and hardly see anyone at all. Precious few people understand dystonia.

    • Many friends, acquaintances and family believe I just suffer from stress. According to them a ‘decent massage’ would release the tension in my neck, shoulders and face in no time. And sadly, a lot of people think that way.
      If only it were that simple…

    • Yet dystonia has brought my family closer together. We are knit even tighter than before. I now realize just how amazing my sweet husband and my darling daughters are.


    Annick is a pharmacist and mother of three daughters. A year and a half ago she was diagnosed with dystonia.

  • Greet

    • Dystonia is a painful, incapacitating handicap, but also a social burden. Due to the strange poses and movements people tend to think you are intellectually challenged as well.

    • Dystonia destroys the body to such an extent that even though it’s said to not be fatal you die of it in the end.
      And above all…

    • Dystonia isn’t exactly sexy.


    Greet was a dynamic and energetic entrepreneur. For years, she travelled to Tokyo, Paris and New York building her business. Dystonia made her ‘dependent’. Now, even leaving the house requires help and preparation. 

  • Ante

    • When Ante sees the photographs, he’s over the moon. Some photos he thinks are wonderful, expressing his preference with grand gestures.

    • How he spends the day? … 
      With his best friends in class and the group in which he lives.

    • He communicates via his computer, scrolling the cursor from left to right on his screen using one knee and selecting items with the other. The speech computer then says what he means.

    • Despite his limitations, Ante has a delightful sense of humour. Who his carer is today? The computer announces ‘miss funnypenny’! Ante laughs out loud as he says it.

    • He also wants you to know what his favourite food is: chocolate milk, cheese croquettes and rolled-up sole fillets… That Ante has taste!


    Ante has been going to the Medical-Pedagogical Institute Sint-Lodewijk since age 3. He is now 15. He cannot speak, sit still, walk or stand, either, but he can communicate and is mobile, thanks to his speech computer and his electric wheelchair. 

  • Madina

    • Six years ago Madina arrived at the Medical-Pedagogical Institute Sint-Lodewijk. Before that, she lived in Chechnya where she received neither education nor medical treatment. 

    • She picked up Dutch in no time and learned to drive her electric wheelchair in less than 2 weeks.
      No lack of motivation and perseverance, then!

    • Today, she attends the second year of secondary school, doing well at math and excelling in her favourite subject: cooking. The other subjects don’t interest her as much.

    • Madina cannot speak or write. She communicates by means of a letter card. That way, she can express herself extremely fast and correctly.

    • She also voices her opinion clearly.  And like any other teenager, Madina has a PC. She loves Facebook and chats with her friends daily.

    • Her great passion? Shopping… just like other girls her age. Buying clothes and shoes. Or going to Carrefour. Together with her mother, since Madina is her interpreter. Her mother’s Dutch still isn’t that good.


    Madina, 16 years old, especially loves the photos in which she’s sitting up straight with her sparkling eyes wide open. Photos as beautiful as that don’t come along often, she says. Usually her eyes are closed and sitting up straight without help doesn’t happen all that often either.

  • Christel and Ronny

    • I am more than my neck, says Christel. I want people to look at me and see a vibrant person who loves life. Ronny agrees wholeheartedly: People should see beyond the dystonia and discover the person behind it.

    • I hope scientific research will manage to improve the quality of life for persons with dystonia.

    • In addition, I hope researchers and doctors will one day be able to discover the cause of my dystonia. And even more importantly: how I passed it on to my daughter, because that sometimes troubles me.

    • Dystonia has matured me, which is probably why I have a lot of friends who are older. Whenever they ask me for advice or talk to me about their problems, it sort of surprises me.
      But I like it, too.

    Christel and Ronny

    Ronny got dystonia at the age of 32. With his PhD in chemistry he built a career in the security department of BASF Antwerp. His passion? Discussing with people and convincing them of the importance of a safe work environment and work process. His daughter Christel was 18 when she was diagnosed with the same affliction. A few months ago, she started working as an assistant-pharmacist. And she has a passion, too: she sings in a choir. Not classical or church music though: rock and pop.